Friday, July 13, 2012

Near Death Experience?

Okay, I know.  The title is quite shocking, but I think this could be truly counted as a near death experience. You tell me what you think.  Be prepared, this is going to be a long post.

I've been having heart palpitations since I got sick.  Well, I've had them since I was 15, but intense ones since I got sick.  They have always bothered me and I often told my husband that I feared that my heart would just stop or that I would have a heart attack or something.  Always made to feel like I was overreacting, I didn't buy into it.  Neither did any of my doctors.  Let's see, I had told 3 LLMD's and my current primary care doctor about these issues.  With one of my doctors, I actually went to his office the next morning after an "episode" and told him I had a heart palpitation that lasted for about 20 seconds or some kind of something went on with my heart.  I asked for an EKG.  He listened to my heart, said it sounded fine, and that I didn't need one.   I was reassured, chalked it up to being a "hypochondriac".   Now that I think about it, my 2nd LLMD did order an echo cardiogram to make sure I was fine and did an EKG, so he didn't ignore it, I was just never referred to a cardiologist.  It is common with Lyme disease to think you are going to drop dead without a moments notice.  And it HAS happened to people.  WAY too often.

Anyway, I had 2 "events" or "episodes" about 6 or so months ago that really got me worried.  One while I was home alone with my teenage step daughter (the time I mentioned above) and another time when I was driving in a shopping center parking lot.  I felt it, it didn't end, and then I started to feel the strange blackness over come me.  It was similar to when I have fainted in the past, but not as intense.  I knew something was wrong and I knew it was related to my heart.  I thought, if I pass out here now, I could kill someone (people were crossing in front of me) so I rolled down my window and hit my E brake.  It passed and I carried on.  Went straight back to where I dropped my husband off for his haircut and told him something bad just happened with my heart and it is best that I stay off the road.

Being the drama queen that I am, that I KNOW I can be, I ignored it.  Until one morning, I woke up and my gut, my intuition, whatever you want to call it, told me to go see a cardiologist.  So I Googled "cardiologist", found one near me, Shiva Heart Center, called, no answer, they were out to lunch.  I'll call in an hour.  I forgot.  I would usually forget the whole thing, assume I was probably imagining these episodes or it was psychosomatic and just drop the issue.  But no, the next day I looked the place up again and called....

There is a reason I am telling you all this.  The reason is to TRUST YOUR GUT INSTINCTS.  You know your body better than anyone.  Had I not trusted my gut, well I would still be here now, but I may not be here a year from now.  Anyway, back to the story.....

They had a cancellation for the following day and offered me the appointment.  I made it and called my husband to make sure he could come with me.  I wanted him there to help advocate for me.  He had felt my heart beat irregularly before and now he too was a believer that something was truly going on.  We get there and the gal at the front desk tells me I need a referral and sent me away until they got approval, but waiting for the elevator, I was upset, I knew I needed to see this doctor today.  I told my husband, I'm going back in and I'm going to ask for the manager.  They saw me right away.  The doc was great.  Gotta love young doctors.  They seem "hungry" for finding the solution to your problem.  My primary care that first diagnosed me with Lyme disease, he was young and he wouldn't give up on me when several had.

Dr. Bhojraj said that he was going to order a Holter Montior for me.  It would stay on for 24 hours to 30 days.  He ordered an echocardiogram, an EKG, and a treadmill stress test.  These things would be spread out over the span of about a month.  The monitor was placed within a few days.  He told me that if we didn't see anything, he would implant a device that could stay for up to 3 years.  THIS DOCTOR BELIEVED ME!  Anyway, the monitor was placed and wouldn't you know it, no palpitations or other events.  I wore that thing around my neck and attached to my body for about 3 weeks.  I carried this cell phone that was part of the heart monitor system.  Very high tech, but also a pain.  It was there to alert the monitoring company if I needed an ambulance and it sent the data over the cell phone to the monitor company.  I told my mom and my aunt that I hadn't had any episodes and that it must all be psychosomatic and that I was "cured".  I must say I was a little disappointed that we didn't catch an event like I had had in the past.  I would move on and accept that my heart was fine, but in the back of my mind, I would always question what was going on.
Here is the cell phone that went with the holter monitor.  The heart would "beat" and the electrodes would beep and it would show me which electrode was not attached right or if I wasn't plugged in correctly.

This brings me to Thursday, June 28th, 2012.  I'm in bed, not feeling well at all.  I was going to push myself.  Here is my post on Facebook right before I got up:

June 28 via mobile
Not having a good day so far physically. But I'm going to grab my boot straps. Or is it pick myself up by my boot straps. Whatever it is, I'm going to get off my fanny and go downstairs to feed my dogs and make my green tea latte. Then I hope to make it in the shower. I may not make it back upstairs, but we shall see :)

I got up and realized, I think I'm going to pass out.  I calmly hollered downstairs to my son (he is 16), "I'm going to pass out."  He said, "Ok."  I know he didn't realize what I meant.  Later he told me he thought I meant take a nap.  I then told him to call dad.  Then he knew, "Uh oh".  He had never been awake when I had anything bad happen to me.  The house phone wouldn't work, my husband had the main phone unplugged for the fax machine and forgot to plug it in. He came up and I had laid myself on the floor at the foot of my bed.  I've fainted plenty of times in my life and always prepare the poor person that has to witness me laying there unconscious.  Must be scary.  But I always tell everyone not to call an ambulance, just get me wet, cold washcloths and place them on my head, chest, etc.  I figured this was a fainting episode and perhaps a seizure.  I had plenty of time to tell him to get the washcloths and that I may have a seizure and that I was sorry.  I felt bad.  Out I went....
When I came to, I had no idea who I was or where I was.  Never has that happened to me.  I thought I had been drugged with a roofie or something.  That I must have been out at night (haven't been in years) and that I must have been drugged.  But then, who was I?  I felt someone rubbing my side.  Then I heard them speaking to me, telling me that I would be ok.  My vision was spinning, it was just like in the movies, I was trying to focus and then I turned and saw my son's face.  Only I had no flipping clue who he was.  No idea, he says when I looked at him, my eyes got really wide, and he could tell I had no idea who this guy was touching me.  It was sweet though, he said, "You'll be okay Sonya, you're okay" (he is my step son so he calls me by my name) as he was rubbing my side.  I recognized his voice before his face and once I realized who it was I relaxed and just laid there.  My husband was on his way and he told our son to call 911.  He had trouble apparently calling out on his cell phone as well.  But I heard the sirens and told him to lock the dogs up.  I also asked him to please put some sweats on me because I was in a short robe laying on my side in a ball.  He moved in record time.  I asked him if I had a seizure and he said yes, just a little one.  He said my whole body shook for about 3 seconds.  While laying there, my heart was going crazy.  Like a drum was being beating in my chest, it was pretty uncomfortable, and I thought, oh geez, I think I'm going to die now.  I was too weak to say anything.  I remembered that the cell phone to the holter monitor was up on my pillow. I was hoping it was catching this.  Little did I know that it was catching this and a whole lot more.
By the time everyone shows up, I'm a little embarrassed. I looked horrible and still had zit cream on my face!   They said I was really pale and asked my husband if I was usually that pale.  No.  They sat me up and I felt faint, so they laid me back down.  I told them I didn't want to go to the hospital, they wouldn't find anything wrong anyway.  They saw my holter monitor and I assured them that I was just wearing it to rule out any heart issues, not because I had any type of diagnosis.  Well, you wear one of these and you are going.  So off I went zit cream and all.  I asked if I could at least put on a bra and nope.  
In the ambulance, the electrodes from the heart monitor were in the way of what the paramedic wanted to do.  He wanted to take a picture of my heart.  Hmmm... apparently they can do that.  So I told him to just remove them.  While en route to the hospital, I hear another ambulance dispatched to my address.  The guys say, hey, that's your house, we were just there.  I told them it was probably because I disconnected my heart monitor.  But I must not have been thinking right because I had it disconnected every day for my shower.   Not sure why it didn't register.  I'll explain in a minute. The paramedic asked me what my normal heart rate was, because it was pretty low, it was at 50 bpm.  I said it is normally somewhere in the 60's.  Trust me, I know my heart rate.  I had issues with tachycardia before Lyme treatment and when I would have heart episodes, those episodes would have me checking my heart rate often. 
So I get to the hospital, they explain to the RN's that my chief complaint is dizziness.  They don't mention the passing out.  I found that odd, but I did tell the RN about it.  Syncope is I believe what they call it.  The ER doctor comes in and says he wants to do some blood work and check the enzyme levels of my heart, etc.  I'm thinking nothing and that they will send me home.  Then he comes back in he looks away from me and leans up against the wall.  Now I know, he was delivering bad news, but at the time, I didn't read his body language.  He says, "I just got off the phone with your cardiologist..."  I'm thinking, how did he end up on the phone with my cardiologist?  "You had a 20 second pause.  You had a 20 SECOND PAUSE!"  He wasn't shouting, but he was pretty animated and expressive.  I didn't know what that meant.  My husband didn't know what that meant.  He said that the holter monitor company also had called 911 after my son had because there is a delay in the connecting of the device I'm wearing and the cell phone (it updates every few minutes).  That explains the 2nd ambulance to my house. It recorded that there was 20 seconds where my heart didn't beat.  Was this a big deal?  Apparently so.  He said that I was being admitted and then he looked at me for the first time since he came back in the room and said, "You are going to the OR, you need a pacemaker."  That was the bad news his body was delivering.  He also said that they give pacemakers to people that have a 1.5 second pause.  So I was getting a pacemaker, end of story, period.  Don't think I had much of a choice.  I later learned that had I left the hospital without one, I would have had my driver's license revoked.  Good point.
I called my cardiologist and he said he was getting me the best surgeon to do this operation.  Dr. Lo is a Cardiac Electrophysiologist and that he does thousands of these operations every year throughout Southern California.  He said he didn't feel comfortable doing it because of two reasons.  I was young (most people with pacemakers are elderly) and because I was female and I was going to be wearing bathing suits and tank tops and he wanted to get me the best.  These pacemakers can be hideous looking.  I appreciated that and relaxed.  My husband's boss came to sit with me while we waited to find out details and I don't know how many doctors came in to look at me and say, "20 second pause?"  I'd have to ask her, but there was probably about 5.  Well, my heart apparently started beating again because it was young and healthy.  I still don't understand why it stopped in the first place.
Got my pacemaker that night and I must say it is a bigger deal than I thought it would be.  I stayed in the hospital over night and until the next afternoon.  They ended up placing the pacemaker under my chest muscle instead of under the skin.  Dr. Lo had told my husband after the surgery that I was too thin to have it placed under the skin.  So I would be in more pain and recovery time would be a bit longer.  But that I would be thankful later because of my age and that it wouldn't be as obvious when I wore tank tops, etc.  I appreciated that.  I found out a week later that I really had the Rep for the pacemaker company (Sara @ Medtronics) to thank for that.  I ended up meeting her last week at my cardiologists office.  She didn't recognize me but when she asked why had a pacemaker, that I was so young, I told her I had Lyme disease for a few years and that according to my cardiologist, the ER Physician (who used to see a lot of Lyme disease patients in the ER in Oregon), and the Cardiac Electrophysiologist this was due to the Lyme disease.  I ended up mentioning the 20 second pause and she looked up at me and said, "It was you?  I was in the OR with you.  Wow, a 20 second pause, well, you could of..... (now whispering) you could have died!"  I was reminded of this over and over again while I was in the hospital.  I didn't sleep much that night after the surgery and a couple of nurses came in to meet me, the "20 second pause girl".  Sara, the Rep told me that if she ever had to have a pacemaker she would choose Dr. Lo to do the procedure and that she was the one that talked him into putting it under my muscle.  She says she sees hundreds of patients with pacemakers per month and that I was so young and so tiny, that it would really be obvious and most likely both me.  She really went to bat for me.  So thanks to Sara!  When I asked my cardiologist what my diagnosis is he said, it is sinus arrest secondary to Lyme disease.
I did have a hard time coping with the pacemaker for the first several days.  I could feel it in me and it just effected me.  I cried a lot.  And I didn't feel well, and so I was afraid I had suffered a relapse of the Lyme disease.  I figured the surgery and anesthesia must have taken it's toll.  I ended up having some good days and Dr. Vinayak told me I had better appreciate, accept, and love that pacemaker.  So I have (I think).  My husband named it "Thumper".  It is the latest and greatest and it is MRI compatible which apparently is a big deal.  My extended family has really rallied around me and I think it has brought us closer together.  My sister, my nana, my aunt and my nieces have stayed in touch and continuously checked up on me.  My mom was out of town so she couldn't come help out during my recovery.  My husband works two jobs so my neighbor and some of my great friends came from a distance to sit with me while I would have otherwise been home alone and to help me eat, etc.  It wasn't the eating, but I couldn't dish out or serve my food with only 1 arm.  It was nice to be cared for.  My husband did THE BEST job and he tried not to stress too hard.  I had surgery a little over a year ago along with a 3 night stay in the hospital in Los Angeles and that was really hard on him.  So he did a great job.  We had help and I am so grateful.  Two nights in a row people from his office brought over dinner for us and it was great.  He even took me to my hair stylist to have my hair washed and blow dried for me.   I am so GRATEFUL!  I sent out cute thank you cards that I found at Trader Joes.
I had my birthday a couple of days ago and here was my cake.  My mom really went all out and splurged!  I didn't make any plans with friends because I haven't been feeling back to my self and I didn't want to have to flake at the last minute and disappoint.  I live about an hour from everyone now.  So it was me, hubby, my son, and my mom.  My son had to go to work but the 3 of us went and saw the movie Ted.  I had to push myself, but I was so happy I went and didn't spend another birthday in bed or on the couch. 

P.S.  I should be trying out Synchronicity Wave System very soon at Dr. Vinayak's house.  I'll post once I try it out.  If I remember, we will do a video!  So stay tuned.  Here is some info on the system.